My Story
My story started in 1996. I weighed in at 16 stone 5lbs (a bit overweight for my 6' 2" height). My wife Lynn decided that we should both go on a diet to lose a bit of weight. We started the Hay diet and after a few weeks, we both were feeling well and had lost about 8lbs each. However, at weekends we did come off the diet to go out and eat and drink in retaurants and pubs. This upset our stomachs for a few days. Anyway, a few weeks later, I came off the diet as I was feeling unwell and had more than just an upset stomach (diarrhea, quite a few times a day). I also had now lost about 3 stones and had developed what I thought was a boil on my bum. One day at work, I was in the toilet when I felt some sudden pain, the boil had burst. I thought nothing of this, until the evening when I went home. I was still feeling in pain from where the boil was, I felt around and suddenly, I felt a hole where I thought skin would be !
The next day I made an appointment with my doctor. That evening, after I told him about my symptoms and after he had looked at the hole the doctor suggested I might have Crohn's Disease but to be sure he recommended I saw a specialist. The appointment was made and I saw the specialist. He suggested that I was admitted to hospital for a 3 day check, I agreed. The first day, I had a barium meal done and it showed I had about 2 inches of inflammation, between the Small bowel and the Large bowel. The next day, I had a colonoscopy and biopsy done. This confirmed that I had got Crohn's disease. The course of action was to be put on a course of steroids and anti-biotics, plus an 8 week rest from work.
After the 2 months, in which I put weight back on and went back to work, things seemed to settle down for a while. I forgot I had Crohn's and carried on life as normal. Early 1997, was when I had my first problems, mainly food blockages caused by strictures. I went to the specialist and had another barium meal. It showed 9 strictures and he suggested that I see a surgeon. The surgeon was very nice and I was admitted to hospital for surgery. The operation took around 6 hours and after I awoke to immense pain (Only controlled by morphine) the surgeon told me that everything had worked out O.K. He had not cut any of the small bowel away but had done strictureplasti (A way of widening the bowel), so I had not lost anything. After about 12 days in hospital I was allowed home. The next visit to the specialist, I was told that I would be put on an Immuno-suppresant called Azathioprine (Immuran). However, after being told the side effects, my wife and I declined (Big mistake at the time).
After 3 months of no problems and being back to work, everything started again. To take my mind off of things we decided to go on holiday for a week, this was much needed as I was a little depressed. After coming back, we went back to the specialist, who insisted I start the azathioprine; I said O.K. Apart from the blood tests every month (needed with azathioprine use), I thought everything was going O.K. I managed to battle on with blockages, stopping eating certain foods, i.e. steak, etc. Until 2000, when things got worse. I had to have another barium meal and that showed up more strictures. In late 2000, I went under the knife again and again I had the strictureplasti procedure and was in hospital for 15 days. I was put on antibiotics for 4 months and carried on with my other drug. Things were very well and I put on weight and we went on holiday for a few weeks to recover.
I managed O.K. until 2002, when my symptoms started to re-appear. I went back to the specialist and was told that my blood tests showed that things were O.K. So, I soldiered on and went about my life. However, late in 2002, things stepped up a bit. I was getting blockages every other week, my weight went down again and my work suffered. Christmas of 2002, was the worst. We were away for a couple of days and the worst blockage, I ever had occurred. I was in bed for about 4 days, with only water and tea to drink, to try and get rid of the blockage. after an eventful New Year, I tried to work normally but was having to go home because of stomach pains. In January of 2003, I went under the knife again, as another barium meal showed more strictures. However things did not work out how I had planned. Halfway through the surgury, the surgeon realised that after the extensive procedure, that the bowel needed a rest, so he called my wife in so she could agree to give me a temporary ileostomy.
You can imagine my surprise when I woke up to find a bag over my stomach, I was very emotional. I was told that it was necessary for the the bowel to heal, without food going through it. However, as my bowel had all the surgury and parts of it still had disease in it; I had to have a High ileostomy. This caused a lot of problems as quickly as I was eating food, it was coming out. I was discharged after 21 days and had to take 8 Imodium and 2 codeine phosphate tablets a day, to make things nearly right. The temporary stoma, was meant to be there for 8 weeks and then I was to have the reversal. I had to stay at home, as I could not drive or stay standing for too long because I was losing lots of fluid from the stoma. This caused me to nearly faint, if I stood up too quickly.
Anyway, after being at home for about 10 days, my scar started to leak fluid. I told the nurse who was visiting every other day and she put padding on it, to soak things up, in the hope it might stop after a few days. However, after 2 weeks and a blood test, I was admitted back into hospital, for re-hydration, due to poor results on the blood test. The scar was still leaking. After 2 days in hospital I was allowed home again. At home it was difficult to get around, as I was still in pain from the operation and from loss of fluids. I was getting pains in my stomach and the fluid from the scar was a funny colour, I told the nurse who came to visit and she said that it was normal, after everything I had been through. My wife was not convinced and made an appointment to see the surgeon. It was with despair when he said that I had developed an abscess in my groin and that another operation to clear it was in order.
I was in hospital for about 10 days and while I was there, the surgeon asked for a Sinograph to be done to see if there were any leaks in the resting bowel and to try and find out where the fluid in my scar was coming from. This procedure involved me being on the X-Ray table and fluid being put into the Stoma and watching to see if it leaked from the bowel that was resting. After 45 minutes of trying, they could only see a little way in, so they gave up. My surgeon was furious about this and said it needed to be done again but he would do it. This was scheduled after I came out of hospital. This time it worked and the surgeon said that everything was O.K. and we could schedule the Temporary Ileostomy reversal but he could not see where the fluid was coming from that was in my scar.
This was now June 2003 and the reversal should have been done in March but couldn't because of the scar leak. During that time I went back to hospital around 10 times for re-hydration and my weight was between 9 stone 6 lbs and 10 stone 6 lbs. The decision was to do the reversal and then leave the scar 'laid open'. The reversal went well and I was able to start eating after 3 days. The bandage was taken off of the scar (looked like the Grand Canyon) and a small stoma bag was put on to catch any fluid. I was allowed home after 15 days, with very strong pain killers (Voltarol suppositories). I had the nurse come in every day to change the dressing on the hole where the stoma was and I was changing the bag on the scar every 2 -3 days. I thought I was getting better and we decided to go away on holiday (in U.K.) at the beginning of July for a week.
On holiday we did a lot of walking and after 2 days the output from the scar doubled and the pain was getting worse, even through the pain killers. I phoned the consultant and he said to come back in after the holiday. I went back to see the surgeon on a Thursday afternoon, he confirmed that it was fecal fluid coming out of the scar and that a fistula must have developed. I was on the operating table Saturday morning. Afterwards the surgeon told my wife and I that apart from the fistula my appendix had to be removed and about 9 inches of diseased small bowel. On Sunday evening the surgeon came round to see how I was doing and noticed that the fluid in the drain bag was not right and said I had developed an infection and that it would need to be cleaned out. On Monday morning, I was operated on for the fifth time. This time when I woke up I found the surgeon had said that another fistula had developed, and they had given me a central line and I was to be put on TPN (Trans Parental Nutrition) to try and get the fistula to heal. This meant I was to be fed by a special formula straight into my veins bypassing the stomach and gut. Also injections of 'Octratide' was given morning and night, to slow the gut fluid down.
The drain bag was put below the scar where the fistula was and used to see how much fluid was coming out. After 9 days the central line had to be removed because of infection and a 'Hickman' line put in (A line put into a vein in the chest, can stay in for 3- 4 months). I was so bored, I could not eat and everything on TV had food on it. I could not drink only suck an ice cube on a stick. This went on for 8 - 9 weeks. I read 25 books ( I read fast), got my wife and family to bring in my games console (PS One, PS2, etc), anything to break up the boredom. In early September, an infection in the 'Hickman' line meant it had to be removed. However, the fluid in the drain bag was down to nil and so it was removed and we hoped things were getting better. On the weekend after the 'Hickman' line was removed the scar burst again, so the TPN had not worked and I was on the operating table again on the Thursday morning.
After waking up, I found out from my wife, that the surgeon was confident that everything was now fixed. Two fistulas had been removed, along with another 9 inches of small bowel. Five days later, walking down the corridor with my wife we bumped into the surgeon, who informed us that, he had just been to the pathology lab to get the results from the small bowel that was removed. We were told that there was now, NO trace of Crohn's Disease in any part of my bowel. If I could have jumped up and down, I would have. We were both very emotional. I was allowed home after being in hospital for nearly 3 months.
When I started this site in November 2003 and I had lost nearly 10 months of my life. Thankfully, I have a wonderful wife and family. My work has been fantastic and are waiting for me to come back. We a trying different things to see what works. We have gone all Organic and I am on a sugar free and non dairy diet. I am also on Probiotics (Even my consultant, now agrees they might help) and anything else that might get the Crohn's Disease to go into remission. I was about 10 stone 4 lbs and I am getting better every day. It is now January 2004 and things are going well, I am now weighing in at 12 stone. So hopefully with fingers crossed things will continue to be good.
It is now February, and after a check up with my consultant and very good news from my blood tests, I am now back to work. Starting slowly by doing part time for about 3 weeks and then back to normal. Have found everybody at work very supportive and very happy to see me back to work. trying to keep stress levels down and taking things alot easier than I did.
Thought it was about time I did an update to the site and especially this part. It's now August 2004 and it has been nearly a year since I left hospital. In that time I have put on three and a half stone in weight and have just had some good news from the consultants, saying that an Ultrasound scan I had on my liver (Just to make sure the TPN did not cause any problems) and my bowel was clear of problems. I am still on my Organic kick and I hope that, that plus all the Vitamins and Probiotics I am taking is helping things out and hopefully I am in remission, but it is too difficult to tell with my version of Crohn's Disease, only time will tell.
Time for another update, it's December 2004. It's been more than a year since I was in hospital and hopefully things are still going fine (fingers crossed). I'm hopefully still in remission, my weight has stabilised and I now look more human with a bit of a tan after a great holiday. All my blood results are still fine and the Organic kick is still in full swing. I am still taking the extra vitamins and probiotics and myself and my wife are looking forward to a great Christmas. Too all those who are in hospital and still having problems, I hope things work out for you and you get better soon. Until my next update, good luck and stay well.
I can't believe that it's been nearly a year since my last update ! Been very busy in the last year, trying to keep my Crohn's under control and making sure I don't get stressed out (I think that stress can be a cause of Flare-Ups, so try to stay calm.). Anyway, my Blood Test results have been the best I had since I left hospital in Sept 2003, so something I'm doing is working (I Hope). ESR, was the lowest ever and my Liver (Which got very fatty due to the TPN) results are nearly back to normal. Still on the Organic kick and it seems to be working, also staying away from all 'E' No's, which can be difficult but not impossible. I have the odd treat here and there i.e. Curry, Green & Black's chocolate, etc. Also, getting extra vitamin's, Probiotics, Aloe Vera and Omega 3 into my body, it's working as I am now putting on weight and am upto 14st 2lbs. Considering I was only 8st 9lbs when I came out of hospital, it's fantastic news for me. So, the only thing I am doing right now is making sure that my Crohn's Disease go's into remission and stay's there for as long as possible. Well, until another update, good luck and stay well.
Well as I said in my last update 'I can't believe' how time flies. It's now the middle if 2006 and things are hopefully under control. Blood test results are still very good and still on an Organic diet, which seems to be doing very well (No 'E' No's or Preservatives, etc). Weight stable, so I must be doing something right !. Anyway, will try to update other areas, as soon as things come in, so for now good luck and keep well.
Well blow me down ! It's July 2007 (Raining and Thunder, the usual) talk about a long time to update this site. Things are still going well (touch wood), blood test are good and the Organic 'kick' is still going strong. Weight is good as well around 14st 5lbs. Things seem to be in remission (not sure I should say that, just in case). I have updated the site finally (See Welfare Page) and I will try and see if I can update the site more often and not just once a year. As usual, stay well and good luck.
Well here we go again !! Another year has gone. Now August 2008. Same as above, I don't know where the time has gone. Went to the Specialist in July to see how things were going and he said to me, that I have been in remission for the last 3 years at least. Didn't know what to say apart from 'Y A H O O' and start jumping up and down. So, that was fantastic news. Only problem is that he is now going to retire from practice (I hope it wasn't becasuse of me !) So, thank-you very much Dr Orchard for all your help over the years. The phone calls made to you at all times of the day, the bad jokes but most of all your friendship, I'm sure that without that neither myself or my wife would have gotten through everything. Last thing to say is, that I hope everyone tries to stay well and good luck with everything. Talk to you soon.
